This is the most intimate and personal post for me yet. I wanted to stray away from the light hearted & humorous reads (just for a quick sec) & dip into the deeper side of my life while allowing my friends, followers, and readers the opportunity to connect with me on a more significant level. It's not always about dating, donuts, and fashion for me (unfortunately). The goal of this post is to become transparent and ultimately, more relatable. I truly believe that authenticity is key, and the second we lose our authenticity.... we lose ourselves. There is nothing more authentic presently, than my relationship with my father.
Mourning someone who is alive might possibly be one of the hardest things for the heart to endure.
Early Onset Alzheimers disease robs not only the diagnosed of a future, but it robs their loved ones of a future, among other things, as well. I'm not talking about regular (late onset) Alzheimers disease that your 85 year old grandparent has. I'm talking about early onset Alzheimers disease that is categorized as anyone under the age of 65 years old including someone as young as 30, that affects approximately 200,000 people in the United States (https://www.alz.org/alzheimers-dementia/facts-figures).
My father happens to be one.
Diagnosed almost 4 years ago on his 54th birthday, my parents and I continue to take each day at a time. Many people are familiar with Alzheimer's disease because their grandparents or elderly parents were diagnosed in the last few years of their life. Many people, including myself pre his diagnosis, know little about early onset. Due to the rareness of this type of the disease and therefore, lack of knowledge, it makes talking about what I'm going through with other people difficult.
How do you comfort a person who is not fighting - but given an inevitable fate? Or empathize with the loved ones of the diagnosed when you know there is no right thing to say, as you just can't relate. As the daughter of a man diagnosed with Early Onset Alzheimer's disease, I understand this. And I don't hold anyone who attempts to comfort accountable for most likely saying the wrong thing. There's not a whole lot you can say.
I struggle with extreme hesitancy before sharing the details of my father with others. I almost always end up trying to make the other person feel at ease when they are trying to find the right words to say. I've reached a point where I sound pretty matter of fact, detached, and strong. "We're only given what we can handle" "It's the life I was given, it only makes me stronger" "I'm doing okay, just taking each day at a time" are just a few of the things you might hear me respond with.
The semi "wrong" things to say to someone opening up about their loved one with Early Onset Alzheimer's disease include:
- Explaining how you know exactly what they are going through because you are familiar with late onset Alzheimer's disease with your grandparent or elderly parent
- Saying something cliche like, this too shall pass.... Newsflash, it ain't passin'
- Recommending professional help like therapy or counseling
- Exclaiming that the loved one should enjoy every minute they have left with them and appreciate that they are still physically there
Most likely the best response, and I believe most loved ones would agree, is to just show your sympathy, support, and love. Sometimes all I want to hear is "I'm really sorry you are having to struggle through something so difficult" or "you are one tough cookie" would be nice also. Because at the end of the day, I do feel this has only made me stronger. Hearing others acknowledge your strength is a small light in what seems like a very dark tunnel.
In all honesty, I've built a callus. I feel numb. I believe I've cried out all the allotted tears I was given. My father is dwindling away, dying in front of my eyes, and forgetting his life and mine in the process, while morphing into a stranger. I no longer recognize him as my father, some may say that's harsh, but everything that I correlated to my father - his mannerisms, hobbies, humor, interests, skills, hugs... have disappeared. I'm left with a shell. Imagine having to stare at the face of your loved one you lost every single day but they are unable to stare back at you. Talk with you. Or simply say, I love you on their own? Some would describe it as torture. I'm forced to call it reality.
As an only child, I am going through this alone. Yes, my mom is going through it as well but we are mourning in two completely different ways as we are also losing out on two different parts of life. I'm accepting the fact that my father most likely won't be there to give his blessings to the man I love, walk me down the aisle, meet his grandchildren, or watch his daughter blossom into a successful woman. My mother is losing her companion, the love of her life, the father of her daughter, her dreams to grow old with him, retire, and travel together. Although, one day she may fall in love again, I will never be able to call someone else Dad.
The most unexpected part of my Dad's diagnosis?
The pain of having to watch my mom dwindle away as well.
That's the thing about Alzheimer's, it's one big waiting game that slowly takes the life out of everyone sitting in the waiting room.
She used to smile every day. She used to seep of optimism. She saw positivity in everything. She loved a great adventure. She enjoyed life and lived hers to the fullest. She craved people, friendships, parties and laughs.
Now, bound to my father. Banker by day, caregiver by night. Work all week, caregiver all weekend. The adventures are few and far between and life seems like it's slipping away.
She still is the glue to our family, my rock, and role model. These last couple of years I see the worrying, sadness, and drain taking a toll on her. I see her strong flame beginning to burn out. She sadly describes her life as robotic, repetitive, with little purpose. She questions if she will ever be able to retire, travel, or love again. I know she is emotionally drained worried about finances and what to do when my dad needs more care than we can give him.
My parents were MADLY in love. One of the proudest and most grateful aspects of my life was having two parents to look up to who loved each other beyond words. I remember as a little girl watching my dad walk up behind my mom, wrapping his arms around her while she was in the kitchen, kissing her cheeks and swaying her back and forth making her laugh. I would always say "ewww get a room" or "Stop it!!" because god forbid a child see some PDA action from her parents.
Now, I would give anything to relive those moments. To see my dad walk up to my mom, hold her, and tell her how much he loves her, while inevitably making her laugh by saying something only Jim Foxen would say.
Loved ones and friends would have described my dad as the life of the party, Mr.jokester, the most loving husband, and thoughtful father.
He loved photography and actually owned his own wedding photography business with my mom back in the day before the digital age. He loved nothing more than spending a day at the lake on our boat. The biggest smiles and belly hurting laughs were products of a day at the lake.
He was the best cheerleader's cheerleader as he was front row screaming my name at every one of my cheer competitions. He was Mr.fix it and Mr.handyman. He completely remodeled our old home all on his own and built me the coolest class projects (yes I was the kid whose dad took over the entire thing that I took credit for, but damn he went above and beyond).
He was the ultimate spider killer, lightbulb changer, photographer, boat driver, tube tower, joke teller, tear wiper, loveable spirit that I had the privilege of calling Dad. He was more than just the stereotypical hero to daddy's little girl, he was my world.
At this stage of the disease, we've reached a bit of a plateau. He has his good days and his bad ones. He knows I'm his daughter and he knows my mom is his wife. If I were to ask him what my name is, he would not be able to say Jamie. Questions are tough. From what month is it? To what did you have for lunch? He just gets worked up and frustrated that he can't find the answer. A lot of the times he understands a generic conversation and would like to pitch in. Except the second he opens his mouth, he loses his words.
I can't stand when I lose my train of thought or can't think of a simple word that's on the tip of my tongue; imagine going through that every time you want to speak. He's just frustrated a lot of the time, and yes, it's heartbreaking.
The Silver Lining
He spends his days with my 88 year old grandma, his mom. They go on walks every day, run errands together, and she enjoys making him a ham sandwich. My grandpa passed away last Fall and in retrospect my family and I like to believe that my dad helps my grandma as much as she helps him. And my dad believes that he goes over there to help her, rather the other way around. We like to keep it that way, because it's a sweet thought to hold onto. And that woman is our saving grace!
Our great friends, and support system, created the Jim Foxen foundation last Summer. Knowing my mom will need additional financial support in the coming years, they decided to host an annual fundraiser. We were beyond touched, surprised, and appreciative. Last year was the first fundraiser and it was very successful. My mom and I appreciate and love every single person who attended and donated. The fundraiser not only helps our family, but raises awareness for Early Onset Alzheimer's Disease as well. Our support system is such a blessing.
Although this post was mostly filled with sadness and despair, it was also real. The last thing I wanted to do was to write sugar coated bullshit and call it authenticity.
But I want you to also know,
I love my father very much, and appreciate the time I do have left with him - as that amount of time is unknown. I don't want you, the reader, to think I have written him off and no longer have love in my heart for the man that gave me everything because that could not be farther from the truth.
This post was completely therapeutic for me and allowed me to face hard feelings I've held in my heart on screen. Sometimes the act of writing something you've been feeling, leaving you able to re-read it as many times as possible, provides validation.
If I was able to educate, empathize, or touch any one of you through this post - then it did it's job.
My family of 3 may be hurting, but we are marching along making the best of the situation. I am a strong believer that everything happens for a reason. This disease has taught me so much about empathy, patience, and consideration of others.
"Be kind. For everyone you meet is fighting a battle you know nothing about."